bad morning, a retrospective

I feel like shit today.

Not so much physically, although my hip is killing me but it’s “just pain”.  It makes it hard to walk, it’s just there, it’s something I can try to tune out if I’m not moving around.

What feels like shit is my brain, my spirit.  I was trying to describe it to my husband, trying to think of how I will describe it to the psychiatrist I am seeing Monday.  It’s hard.  The anxiety is easier to describe, it’s so pointed and abrupt, so obviously not ok.  The feeling of dread, of unceasing worry about hypotheticals which should have little to no place in my day but which pop into my head unbidden and unnerve me deeply, leave me feeling as if this terrible thing has just happened or is imminent, as if there are warning signs of it all around me.  It’s response without stimulus.

The depression, if that’s what it is and jeez if it’s not I don’t know what else to call it, is different.  More nebulous, more insidious.  It’s a sapping of will, a dwindling, an absence.  Will is what I have relied on for so many years, and it’s a strong will I usually have.  Thank god it is, because with the health issues and the PTSD, I really have had lots of call to use it to pull me through the tough times, tough sensations that make it hard to get up and go, to do things, to occupy myself, to keep my attention focused (more or less well, but at least in a way that feels properly effortful, right, and good), to follow through with things like making and eating food, daily tasks we do even just for maintenance of self and environment.  Silly me, I didn’t know this will was apparently finite.  That someday I would reach for it without even thinking, as I do, to move myself to do the things I need to do despite the daily elements of my chronically ill life like fatigue, dizziness, nausea, pain, anger, despair, shame, and it would just be absent.

Today, it is absent again.  How do I define what it feels like to have this absence?  How do you describe a void?  It’s harder than describing the additive symptom of anxiety.  Describing the void, it seems like the best you can do is describe the borders of it, the things that bound that space, and then just point and say, “and there is where SOMETHING should be but it’s not”.

I’m still perplexed by the onset.  I like to know where things came from, why they came about, mostly I think because those offer clues to how to address them.  This…did it come about from lassitude, the necessary lassitude that comes from having a fatiguing chronic illness which occasionally rears up into some set of acute, disabling, and ugly symptoms…the crushing weeks of nausea I experienced cyclically from January through March this year?  I was necessarily less active, had to cancel more, plan less, and now I am experiencing the absence of Things to Do because I had to cut so many things then that now there is little left and little to move towards.  Work, volunteering, friendship activities.  If so, I just need to go out and do those things now to fix this, right?  Wrong.  The parameters are still in place, i.e. I am still sick and so I cannot take on a full time job, I cannot even guarantee that I’ll have the stablity of health to make regular attendance at a part time job.  The best I can muster is work on finite short term projects that I can do from home when my health allows.  The irony that my physical health would have allowed me plenty of that but that I cannot find or get it these days is not lost on me.

So then lacking that, I should focus on other things with more lax “attendance requirements”, like volunteering.  I tried that.  I was in touch with the library folks in January and February, there were attempts to place me as a tutor with a student, and they all failed.  Between the weather and my cycling nausea (which, reading back in those early february emails I am reminded I optimistically thought of as a stomach flu, until it kept coming back), I was unable to make this happen.  And so that volunteering work went dormant.  I started PT and OT at the end of February, still feeling quite terrible as I recall.  That was PT twice a week and OT once a week, and that wasn’t including any other medical appointments I had in there (follow up on my check in with my primary care which included a visit to the nephrologist, a day full of appointments at the BATH for podiatry, Allergy, and something else…dentistry?  A filling maybe?  I think so.)  That takes me into March.

March was full of medical appointments.  Trying to get to the bottom of the nausea, PT, OT, Disability forms, that was March.

April started with a sleep study.  A follow up appointment from the neurologist I saw, which itself was a follow up to a follow up to a follow up (I went through four neurologists total at one clinic because they kept leaving, I had started with one who did autonomic function and sleep medicine and when he left I got passed around to the rotating crop of sleep only neurologists).

In April, I wanted to try to get out more socially.  The snow was finally melting away so getting out of the house and getting around was more of an option.  The library volunteering opportunities were limited, I was not going to take on another class, not after the last four months of acute awful flare ups, but I was emailing with a new volunteer who would be teaching and whom I was hoping I could help out as an in class tutor.  Meaningful work, occupation, without as big or formal of an attendance requirement.  Then that was put on hold, reasons outside of my control.  April also brought family visits, and all my energy went into preparing to host and hosting, and then recovering from hosting.  While recovering from a big family visit in mid April, I had an appointment with a new neurologist, a last ditch effort to find someone to help me investigate and manage the autonomic issues that have come to a head over the last two years or so.  She was…ok.  Not great.  Nice, nice enough but she seemed to not really be inquisitive or eager to dig at all, just told me that this comes with ehlers danlos, Ok, so we’ll go with that.  Fine.  She wants to see me in August for a follow up.  Ok.  Fine.  Follow up on what, I’m not sure.  Take my blood pressure sitting and standing twice a day, fill out a survey cataloging my symptoms, except they aren’t all on there, some of the ones that cause the most disability, the most inability to work.  I found myself wondering if she really knows what she’s doing or if she’s just become some kind of “nice” EDS/autonomic doctor who treats us as a sort of hobby.  This impression was not helped by the fact that she recommended a gluten free diet despite my having tried that several years ago and consistently testing negative for celiac disease, and the fact that if I eliminate gluten from my diet, I will have considerably fewer calories to my day.  Despite all this, a doctor who insists that I would benefit from a gluten free diet on only the flimsy reasoning that “some of my patients report feeling better on a gluten free diet” can’t help but ring my charlatan bells.

Early May.  My husband’s parents visit.  More preparing for hosting, hosting, and recovering from hosting.  I think this is when I am actually starting to feel some increased anxiety, decreased mood.  It’s so gradual, so easily dismissed as a bad moment, that I don’t realize it’s a pattern yet.  But I recall in May having to make more of a conscious effort to do things like regulate my mood (I’d find myself in a bad mood for no really immediately good reason and have to choose to put it aside and focus on the here and now, and to essentially choose to be ok, to be in a better mood), I also think this is around when the anxiety started ramping up.  Fears that my husband would die, fears about retirement and having no money, shit like that. I assumed they were all grounded fears, that I was just feeling extra vulnerable for some reason and that it would pass.  I didn’t realize it would grow.

May brought more talk of tutoring/teaching, but a request from the library staff to “put it on hold” until after their recognition event in mid May, which was ok because in mid May we had my sister’s graduate commencement (which was an hour away and involved a half day trip with packed food and time away from a couch where I could rest if I had to), then came a week with husband’s medical stuff, another early half day at the hospital where he got double scoped, and I sat without much for food in the waiting area, feeling crappy, not able to lay down, keeping my feet up as much as possible and pounding cold water for the temporary blood pressure elevation it brings.

The last week of May, I finally was able to reconnect with the library staff.  We made plans for me to meet weekly with one student to tutor them.  I spent the next TWO WEEKS trying to get in touch with that student to set up plans to tutor, but to no avail.  Finally, the library staff connected me with another student, which brings me to last week.  And last week was when the lack of things to do, the occasional visits with friends for coffee, the days at home with nothing, not even PT or OT to break it up, all of it, started to pile up on me.  I had been slowly decreasing how much I was cooking and therefore how much I could eat, but I found even when I forced myself to prepare food, I was throwing much of it away at the end of the week uneaten.  I just didn’t have an appetite.  I was losing weight.

Then came the sex.  Husband and I tried one day I think two weeks ago now, it just wasn’t happening for me so I gave up and, er, took care of him.  Then the next week, this past weekend, I thought I’d give it a go anyhow.  And it just…didn’t work.  Just didn’t happen.  I’d say it was the equivalent of impotence in a man.  That was devastating.  The days leading up to it had been particularly bad for anxiety and that sapped will feeling, restlessness with a side of sucking inability to motivate myself to do or stick with anything I tried to do to alleviate the restlessness.  Did I mention the anxiety?  That then turned into anxiety about the anxiety, about the incurable restlessness, the sapped will, the not eating, the lack of attention or ability to derive even satisfaction (normal for me) from doing the small and big (for me) things I need to do to take care of myself, my pets, my household.

So this weekend it all came crashing down.  I cried a lot.  I couldn’t stop once I started.  I was afraid of all sorts of hypothetical situations, worried that this was a permanent change.  Horrified that I hadn’t noticed this creeping up on me, how out of touch with myself I had been.  How easy it was to explain away each loss of ability or in the case of the anxiety newfound ability to scare the shit out of myself, as something situational and transient, controllable.  I let this happen to myself, right?  I made it happen.  I stopped tending to my psyche and sexuality, maintaining them because for much of January through March, I was just surviving.

Or did I?  Because here’s the thing.  I’ve had bad, bad,bad times before.  And this has not happened.  This feels very alien to me.  Even for “bad me”, this is not the type of bad me that I get.  I get mad, I have uncontrollable rage.  I act out aggressively, verbally, sometimes physically.  I hit things, I break things.  I am morose and moody and tumultuous.  I get more promiscuous than usual.  I know these bad things well, I’ve spent a lifetime dealing with them and finding ways to manage them.  This is new, very different.  And when I think back on the past few months, and what was going on that lead up to this point, there is one thing I am reminded of.  In March, late March I think?  at the advice of my GI doctor in response to the cycling crushing nausea, I increased my Reglan.  I had been taking 10 mg 3 times a day, often getting away with twice.  She recommended an increase to 10 mg four times a day, and I did it.  Not without some worry, mind you, but I did it.  I upped the med because the nausea was so crushing, it made me feel suicidal.  The thought of being a slave to the nausea and how it robbed me of being able to feel anything good was too much, so I upped the Reglan despite the feared side effect of tardive dyskinesia or other dystonia, which I had good reason to fear since in late Fall I started having muscle spasms in my face, around my mouth and under my eye.

But what I forgot to be vigilant for was the other set of side effects of Reglan.  The anxiety and depression side effects. It just didn’t even cross my mind.  And I wonder if that’s at least a part of what’s going on now.  One bit of evidence against it is that since my appetite decreased, I didn’t take it four times a day on days when I didn’t eat three “big” meals.  But that was sporadic.  I have, for the last three nights, stopped taking my bedtime dose.  That plus the fact that I am now officially only eating twice a day means I am now taking half the dose I had been taking since March, more like what I was taking before.  So far, I’m still not ok, but I’m trying to stay hopeful that maybe it just takes a little while to get out of your system.  It came on slowly, it may have to retreat slowly.  Reading the internet, when I can be moved to even bother doing so (again, very weird for me), you’ll find patient forums where people claim that Reglan gave them permanent mood disorders, which is scary but I try to remind myself that reading patient forums is just plain scary, that these are many of the same people who report placebo effects of gluten free diets with such confidence that their otherwise well trained neurologists believe them and pass that shit on to other patients.  So I try to take it with a grain of salt.  But still, it is worrisome.

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  1. What’s changed? | Final Trick

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